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My D and B 12 are ok now. Back in March my D was 13. They started me on 50,000 units weekly. It was still only 28 in July so I am still on 50,000 now every 5 days. Now it is 38. B 12 is good. I am tired, but I don't sleep at all. I can't even sleep with ambient. It's annoying.

Blood test said weak positive in comments. Test: IgA,Tissue Transglutaminase Ab, S right at 4 (less than 4 normal range per reference on sheet) Now 6 weeks later redone at 1.8 normal range. IgG,Tissue Transglutaminase Ab,S 6.3 (less than 6 normal range) now 3.1 6 weeks gluten free. They just did TPO antibodies and 21 Hydroxylase AB and they are in normal range as well . They tested them because I just had surgery and went into my second "adrenal crisis" Cortisol was 0.3 ACTH was 2 (3 days post op). Had an adrenal crisis a little over 15 months ago 3 months post op level was 0.8 ACTH was normal . Also have hypothyroidism and level has been all over the place so they were checking for hashimotos. Right now on synthroid 88mcg with an extra half pill on monday and friday. will up to 100 mg in 9 weeks. Could the TPO antibodies and 21 Hydroxylase Antibodies be normal due to being gluten free for 6 weeks as well? I am just so confused by all this and am so weak and miserable. Although my gi symptoms have improved with the gluten-free diet, the rest has not. Although they did throw me into surgical menopause and are still adjusting hormones as well. I'm complicated to put things simply LOL! Thanks for your support.
Let me add I not eaten in almost 3 days when the blood work was done. ( I don't know if that affects the test or not)

That is exactly what it says. It was does done at the Mayo clinic. Don't know why there is no number after the second 5 . The doc says they can't be 100 % sure I have celiac. they say I can do a gluten challenge in a year and another biopsy. Uh No . I feel so much better gluten free why would I want to torture myself. No test is 100 % . What proof do they need? I guess because my ttg wasn't skyrocketing high? or my biopsy (blunted villi) was only suggestive of celiac/sprue per the pathology report? I give up. Even my primary and my ob/gyn think its obvious so why doesn't my gi? I ask him and he can't give me an answer. He doesn't know much about celiac it seems. The dietitian knew way more.

Can Anyone interpret gene pairs? I was told I was positive for celiac gene pairs. Results are as follows. Was curious how to read the results exactly.
Celiac gene pairs present? yes
DQ alpha 1 : 05:01,05
DQ beta 1 : 02:01,02:01
"Comments: These genes are permissive for Celiac disease. (The absence of HLA Celiac "permissive" genes would make the presence of Celiac disease unlikely.) However, these genes can also be present in the normal population. Method: Low to Medium or High Resolution Molecular Testing "

I am just as confused. I thought the same thing. Even the pathology report says that the damaged villi is most likely from celiac/sprue. So I really don't know. I'm as confused as all of you. I wish they would have just said you have it or you don't. I asked why they thought I didn't and he dodged the question over and over. Like I said I couldn't get a straight answer from him or the endocrine. Maybe because my blood tests weren't astronomically positive, just above normal slightly? I don't know. I give up trying to figure it out. But going from years of being nauseated and vomiting and being told I have gastroparesis to being able to get through a day without the nausea and vomiting and now being able to digest food more normally is diagnosis enough for me. Education in the medical field on celiac is obviously lacking.
Thanks for the support.

Yes I have been extremely strict on the diet. And yes think he is a pretty lazy doctor who just wanted to work 8 to 5 and not take call or work weekends. I could be wrong, but I am not impressed by him... not at all... not in the slightest.... but there are good and bad docs wherever you go. Hence why you cannot trust every one you meet no matter how qualified they are . I have had some really good docs and really bad ones. I have had the "best" surgeon in town, mess me up for life. You have to look out for yourself.

So I had my 6 week follow up appointment. They retested my TTG and my numbers are now within normal range. My GI still says I may not have Celiac. Even though the biopsy was positive and the TTG antibodies positive before going gluten free (now normal) and I do have the celiac gene pairs as well.
Copied from result page
Not sure how it is interpreted ... ???
Celiac Gene Pairs Present? yes
DQ Alpha 05:01,05
DQ Beta 02:01, 02:01
He said if I really wanted to try gluten again in about a year I could for a few weeks and they could do another biopsy. Why? Why would I want to make myself sick? I asked him? He's like well some people really need the confirmation? I'm like I get cross contaminated and I'm sicker than a dog and I'm only six weeks in. He didn't' say anything just said well if you want to try you can. we can't be 100 % sure you have celiac. I'm just like what proof do you need. I don't know. I'm just so not convinced anymore that mayo is all it is cracked up to be. I felt rushed and none of my questions were answered. He was like gi wise you are fine. good bye I'm sending you to endocrine. The endo was stumped and basically said I'll do some bloodwork and write you a letter in a few weeks. Ok whatever... I give up. I will do my own research and for gosh sakes my uro/gyn locally that takes care of my IC knows more about Celiac than these two docs. Very scary how minimal some docs know about celiac. I guess I will give mayo credit for finding it and putting me on gluten free diet, but whoa, what a disappointment in follow up care.

Well I am so glad I listened to all of you and brought my own food. I ended up being in the hospital 9 days for a simple laparascopic ovary removal. I ended up having an adrenal crisis and being placed in the PICU for a while. I was sent home friday with a pulse of 47 BPM and in a steroid induced diabetic state. The insurance company pushed me out. The hospitalist was out of ideas and sent me on my way with only enough medication to get me to see my endocrinologist back in my home town . IT was pathetic. And I was getting worse by the day only to find out they were giving me huge amounts of gluten in my meds that they decided to figure out on the 8th day and switch me to gluten free versions. POISON I tell you. I just don't get how they can do this. They sent me gluten free meanls but it was the same thing every day. Egg for breakfast , baked potato and chicken for lunch and dinner with fresh veggies and gluten free bread no one would want to touch. Nor eat when I was so nauseated I had to be on IV nausea meds and was still vomiting. So I lived off chex cereal when I could munch something, or some rice my mom would bring in. This is one of the largest medical centers in the region and you would be surprised at how many of the nurses didn't even know what celiac or gluten was. SAD! Apparently a lot of education is needed in the medical community. I am feeling better tummy wise now that I am home on my own gluten free meds and foods knowing that I am not being accidentally poisoned. I am still so weak an frail and have a long ways to go. Again thanks for all the support!

Unfortunately I am all too familiar with hospitals as this is my 11th surgery. I had a minor procedure in July that was supposed to be an in and out in an hour and I was there for 5 days so my track record is not good for doing things quickly. My body does heal and respond just not quickly. I have a hard time with nausea, pain control and breathing post op. Nothing life threatening, just enough I need a few days of extra help. A little oxygen and breathing treatments, some IV pain meds and nausea meds and usually just IV fluids the first day or two before I can eat anything. I was just diagnosed with celiac in August so this is very new and I do not want the bloating brain fog sharp icky and pain back on top of all this so I will pass on hospital food. They can give me liquids via IV and packaged things I can read labels to (beverages, etc.) but I will once i can eat solids bring my own food it sounds by your recommendations. I have chex cereal, rice crackers, some plain peanut butter (gluten free of course). I unfortunately live far from the hospital (an hour away) so will not have my husband with me the whole time but will have him ask the nurses if they have a fridge that he can store some gluten free stuff in for me (yogurt,etc ) I won't need much for maybe the day I will be on solids before I go home. Thank you all for the advice as I would have probably had more faith in their dietitians than I should.

I'm having surgery tomorrow to remove my ovaries due to large complex cysts and other troubles. They said I could be in the hospital a few days. I have never been hospitalized since being diagnosed. Are hospitals pretty good at following gluten free diets and keeping cross contaminants away. I am horrible with nausea with anesthesia I definitely don't need the added stress of worrying. Should I bring my own food? Just wondering if any of you have had any experience with this and have any tips to share.
Thanks!

I have been gluten-free now for two weeks. I have not eaten out but maybe twice and very particular with the waiter and off of a gluten free menu. Today my family went out for Labor day and I went to a place I had been before. They weren't busy, I ordered off the gluten free menu, but before I left the restaurant I was in the bathroom twice with D and horrible stomach cramps and pains. I have never had pain like this before. Could it be "cross contamination" or hidden gluten ? I know it was not food poisoning as my husband shared it with me and is fine. He is not celiac, but likes to eat like he is to make me feel better ! Just wondering if this is what it is like to be glutened? If so I am definitely going to be a lot more paranoid about eating out from now on! UGH What a miserable feeling. And how long will this last? I didn't think my body would react so negatively to gluten just two weeks out? I am so glad I have all of you to ask questions to as the docs just say maybe so to everything. LOL

I know a lot of you here have the big D, but I have and have always had quite the opposite. I can go days, even weeks without going. I have had every test known to man and nothing is "physically" wrong. They say it is just the way I am wired and should improve now that I have been diagnosed. That some celiacs are constipated. I have only been gluten-free for 10 days. The nausea has improved as has the bloating but the constipation seems to have gotten worse. I eat plenty of fiber and drink plenty of fluids. HMMMM... any tips of the trade would be appreciated. Thanks

I wanted to believe that Mayo would help me. I am hoping that their celiac theory is the answer as I really have no further follow up at the mayo clinic. They kind of said try this and see what happens. Follow up with your doc back home or call us. I felt rushed out the door when they had a possible answer. They were also more than happy to have my local docs handle my "cyst" I really felt like a number and not much of a patient there. I was born there when my dad was in residency there, and had not been back since I moved away when I was 2. I had high hopes as to solving my complex medical history and came home with very little more than I had gone in with. They were thorough on the gastro end but barely touched the surface of the endo/adrenal/neuro issues. Maybe another time if symptoms persist. For now I will continue with the hope that gluten free is the key and once I have the cyst removed things will improve (wishful thinking, but I have to start somewhere) 11 days gluten free... nausea improved a bit, bloating gone, constipation still an issue and maybe unrelated. Any ideas for relieving? Thanks for all your input, this is a great community.

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!